{"id":"W4393116621","doi":"10.1080/21678421.2024.2328599","title":"Patient engagement in research: lessons learned from CAPTURE ALS, a longitudinal observational ALS study","year":2024,"lang":"en","type":"article","venue":"Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration","topic":"Mental Health and Patient Involvement","field":"Health Professions","cited_by":4,"is_retracted":false,"has_abstract":true,"ca_institutions":"ALS Society of Canada; McGill University; Montreal Neurological Institute and Hospital; Université de Montréal; University of Alberta","funders":"","keywords":"Focus group; Observational study; Community engagement; Empowerment; Public engagement; Government (linguistics); Documentation; Psychology; Public participation; Medical education; Political science; Public relations; Medicine; Sociology","routes":{"ca_aff":true,"ca_fund":false,"ca_venue":false,"about_ca":true,"invisible_to_affiliation_only":false},"retraction":null,"screen":null,"direct_labels":[],"prediction":{"model_version":"codex-gemma-dda1882f352a","candidate_categories":[],"consensus_categories":[],"category_scores_codex":[0.002250615,0.0002688389,0.0003520317,0.0002247742,0.001095725,0.0001508305,0.0001199428,0.0002126992,0.0004064074],"category_scores_gemma":[0.00003314157,0.0002180277,0.00005734033,0.000343587,0.0000559732,0.0004299307,0.0001989151,0.0009622592,0.0001165462],"about_ca_system_candidate":false,"about_ca_system_consensus":false,"about_ca_system_score_codex":0.0005627944,"about_ca_system_score_gemma":0.0002460277,"about_ca_topic_candidate":true,"about_ca_topic_consensus":false,"about_ca_topic_score_codex":0.02444465,"about_ca_topic_score_gemma":0.01107258,"domain_scores_codex":[0.9944739,0.002230601,0.001013243,0.0007924953,0.0008026953,0.0006870193],"domain_scores_gemma":[0.9988869,0.0002811553,0.0001308031,0.0002891055,0.0001580917,0.0002539667],"domain_codex":null,"domain_gemma":null,"domain_candidate":null,"domain_consensus":null,"study_design_codex":"observational","study_design_gemma":"observational","study_design_scores_codex":[0.000403704,0.0008004646,0.933211,0.00037941,0.00008957306,0.00005679791,0.03172435,0.0002259551,0.003672896,0.00362375,0.009907346,0.01590473],"study_design_scores_gemma":[0.002174492,0.001183799,0.9662508,0.001822594,0.00003941675,4.127692e-7,0.004004782,0.007469595,0.00008529172,0.005140093,0.01138275,0.000445931],"study_design_candidate":"observational","study_design_consensus":"observational","genre_codex":"empirical","genre_gemma":"empirical","genre_scores_codex":[0.9880384,0.002266433,0.00006218143,0.005095733,0.001883673,0.00222657,0.0001749962,0.00007314449,0.000178884],"genre_scores_gemma":[0.994949,0.0004981195,0.0003703248,0.0007839763,0.0006920162,0.0008080172,0.001332848,0.00003359487,0.0005321214],"genre_candidate":"empirical","genre_consensus":"empirical","teacher_disagreement_score":0.03303982,"threshold_uncertainty_score":0.9820517,"prediction_status":"machine_predicted_unvalidated"},"machine_scores":{"provisional":true,"baseline":true,"maturity_gate_passed":false,"score_opus":0.7845738641978866,"score_gpt":0.5022835044856921,"score_spread":0.2822903597121944,"validation_status":"score_only:v0-immature-baseline","note":"Baseline scores from an immature model (maturity gate not passed). Scores rank; they never assert a category."}}